Well I spent yesterday afternoon sitting in the ER room trying to get someone to sign a paper so I can get IVIG. I didn’t get the signature…
now I have to see a neuroligist in Victoria, I have an appt next Thursday.
so the question remians when will I get IVIG?
This doctor has also said I can only have 70 grams of IVIG even though I have an order from another neuroligist and doctor ordering 90 grams.
Stay tuned….I feel like a prisoner. I guess this means I can never go on extended vacation if I want treatment.
How do others deal with this? I would be interested to know.
I will update as I get more info myself.
Have a great weekend, I know mine will be filled with pain as I am already 1 week overdo for treatment!
Yeuhan was there at the same time as another friend of mine – he’s been out of the hospital for at least a month, so doubt he’s in Chicago at this time. My friend told me (while they were both still in the hospital) that he was doing great and felt better and was doing better before he left the hospital. BTW – my friend is also doing good. She is just bored staying home, but is happy she went through this … even though her insurance didn’t pay!
Hello, sorry for taking so long for the update!
I started my new treatments almost two weeks ago. My home health nurse came out to help me with the first infusion. I have been doing home health for about 5 years. She had not done a subcutaneous treatment before so we learned together and my pharmacist from Coram was available on the phone for questions.
We transfered 10grams of Hizentra from three small bottles into a large syringe. That syringe gets put into a Freedom pump -very small pump that runs from a wind up dial. We hooked a transfer tube onto the main tubing which is really small. I started with a three way tubing and moved to a four way tubing set.
Each has a tiny needle that you insert into a fatty area which is no problem. I have done stomach and inside of my thighs. the only problem we had was that the first infusion took over two hours when it was suppose to run at under an hour.
That has remained a problem and they told me that hopefully after each infusion that my tissue would be able to absorp better each time but it has gotten worse. The last 10 mls or so took over an hour and when I remove the needles I leak so to speak and not just a little.
Each site gets a build up of fluid under the skin which you can see. It absorps in the next day and I had only minor irrations on the skin.
The other issue outside of the absorption problem is a chronic headache that I did not have with Gammunex. I did ask about why I had to be switched after a really successful past 5 years on Gammunex.
My pharmacist that Gammunex was approved for SubQ at the end of the year but it was actually approved at the same formulation which means it would take a huge quantity over more days to keep the same dosage where as Vivagloblin is 16% and Hizentra is 20% concentration requiring fewer grams to be effective.
I wanted to give up after the first two infusions because of the headache and time it was taking but I have stuck with it. Unfotuneately my Saturday treatment took 3 hours and that is after all the prep of the IG and the needles and site. UGH!
they think that my tissue structure just cannot absorb – go figure something else in my body doesn’t work! And because of the loss of feeling in my right hand it was quite hard to transfer the plasma from the bottles but they did send a larger needle. I was hoping to everything by myself especially since it seems to be taking so long.
So one of the trade offs is I am going from a home infusion that takes 1.5 hours twice a month to 12 treatments a month at 3.5 hours – so almost a full week each month in treatment time. I feel like I have gone back to the long in hospital infusions.
If any of you still go to the hospital for infusions it is worth asking about home care. I live in south dakota and my nurse drives an hour an half to get to my and without a nurse making the suggestions to me almost 6 years ago to try this way I would have never thought it possible to infuse at home.
I am talking with my pharmacist tomorrow – but I am predicting a failing grade to this subq option for me.
The hope was to not have the peaks and valleys associated with IVIG but I am patient and will continue to be careful on my life choices to manage the gap in between treatments.
I also found out that the cost of the infusions is really only slightly cheaper because of the supplies needed but minus the nurse. This is only true if you are infusing at home. Cost between home and hospital infusing is much different.
My insurance approves either and also approved the switch from brands.
I would appreciate others who try and switch like Julie to share their story.
I actually had not problem doing poking myself – after all I have been through – those itty bitty needles were nothing. And as Julie said – because of nerve damage I don’t think I feel everything and I actually get “stings and shocks” that hurt more than that!
I went to see my neuro in early January, my symptoms were down to numbness in the souls of my feet and tingling in my toes. He told me he didn’t want to see me again, unless it ever got worse. He gave that a 2% chance. It’s been six months since diagnosis. I’ve been back at work for three months.
Surgery is January 7th. I will be in the hospital for 2 days then they ship me to rehab. I have settled with the idea of the nursing home for 8 weeks(at least) I went to (am there now) DC. Sleeping upstairs and my foot is killing me. the stairs are really doing a job on my foot. Glad i got to see my family and the dog. But i am ready to get home. Foot surgery is… break the heel and reposition it Move two tendons from inside to outside of my foot to straighten it. off my feet for 8 weeks.
finally get ivig treatments 2 x aweek evey week. Seem to be going well. starting to notice a change. especially when it comes time again for another treatment. back in pt for a lower back issue and now will have to have foot surgery sometime in january(if i make it that long) I will be off my feet and back in a wheel chair for 6 weeks. Dr hopes i dont develop a stress fracture before than. Seems i am walking on the outside of my foot and on the verge of fraturing outside of my foot. By end of day can hardly walk. pain is tremendous. But after surgery i wont have to wear a brace. he is going to do a tendon transfer and break my heal. after that my foot will be in correct position. Seems my mom pulling up the ramp was a little premature. it should be interesting getting in and out of the house in a wheelchair with no ramp.
Just an update about a mobility scooter.
Just lately, two people…my sister, and a stranger from my coupon-club have offered to help me pay for a mobility scooter, but I declined. I decided long ago that this is something I really want to pay for myself, because when I finally get behind that wheel, I want to feel like I truly own it, and that in spite of the GBS/CIDP I was able to figure out my problems and meet my own needs. I’m trusting the Lord to help me to keep on saving up for it, and to help me to find the right deal at the right time.
BTW, I am also continuing to walk a bit better. And a few times now, I’ve actually jumped up from my chair without my cane, like I used to do.
(Who cares about etiquette???)
My heels still hurt badly; but my vocal chords have been improving slightly. Have been stockpiling for the winter, and have to oil my rollator wheels. When I think of all the water and groceries and other stuff I’ve carried on my rollator for the past 3 years, I’m just amazed; it’s been a real Godsend. And it only cost $10 at a yardsale; old and worn but tried and true and a tremendous help, completely dependable, except for those small wheels. I’ve even wheeled it up to the hills to pick berries, and it’s lightweight, so can be easily managed, except in snow.
Had a chance to try out a new rollator a couple of weeks ago at the townwide yardsales, but found that the center-of-balance of the carrier basket was in the front of the rollator, not the middle, so the wheels were always getting stuck whenever they came to a curb. Also, that one had no solid back-frame (just a back-support strap), so couldn’t be tilt-lifted over a curb. The people who make these designs need to actually try them out, don’t you think? Here’s a disabled person trying to use one of them, with water or groceries in the basket, comes to a curb, the large wheels won’t even rise over a 2 inch bump, no solid back frame to grip and heave the walker over the edge; so even an able-bodied person would have a terrible time handling and lifting that beautiful, but heavy and poorly-designed rollator.
Life is amazing with all of its turns… I had been on a waiting list at a free clinic for counseling. I got a call yesterday and went 2 hours later for this counseling. This is a church place with a big community center and the docs are all volunteers. I met this most precious older woman with a PhD… long story short, I go next Wednesday to see a neurosurgeon that she set up an appointment for me. She was aware that a spinal tap is needed to diagnose things – I wonder if this is the way to diagnose CIDP? I am so excited and grateful!!! This will not cost me anything 🙂
She also gave me a lawyer place to do more on my SS filing and bankruptcy – I believe that will be very low cost if any at all. I will call them Monday. I will also see this counselor in two weeks and she recommended a ‘revovery’ group for me to attend which I will do starting next Thursday – for free.
I had started a temp job yesterday but left at noon and called the temp agency telling them I won’t go back. It was not an environment for me at all as I couldn’t speak and the work was very complex. (I don’t think I could do the medical billing stuff from home as you have to learn coding and stuff.)
So if I hadn’t left that temp job, I wouldn’t have received the call to go to counseling right away and meet this ‘angel’ counselor. My birthday is next Tuesday and this all is the best present from the Universe that I could have ever received.
I was so wound up yesterday and got to sleep in today with thunderstorms – the best sleep ever, oh and 12 hours of it!
wanted to thank everyone for their comments the results came back i do not have cidp i have charcot marie tooth disease their is no cure or treatments for it. just have to live with the fact i am never going to get any better . i believe he called it cmt1a . he said what made it get worse so fast was the prednisone you have to keep your sugar low mine was so out of control even with the 2 types of insulin and oral meds. i have noticed my sight is not what it should be either. I called a lawyer to see if i could do anything about the wrong diagnosis and treatments they cant prove anything since its a progressive disease and cant prove that it put it in overdrive i am hobbling around the house ok was hoping after the prednisone wore off i would do a little better but ive been off it for 4 months now i as starting to sweat again
Hi everyone, I have my 2nd cytoxan tomorrow. Thanks for your comments. I tell you, I am even more hopeful than before. Pam, my feet have been numb for the past 8 years and I think you are right about them not healing but I can live with that if I can get past the fatigue I will consider the treatment a complete success!!
I will keep you all updated with my experience and Thank You All!!!
getting ivig every week on monday and tuesdays. so far no improvements…. that i can tell. Nurae state my gate with use of my walker looks better. still exhausted all the time having trouble thinking clearly. this lovely symptom was blamed on my sleep apnea but now sleep with cpap machine and still cant remember sh**. Feet are permanently damaged so dont expect them to change but now starting to think maybe my hads as well they feel the same as my feet. doing IVIG 2 times a week and working the rest (this week working saturday as well) I am also suffering from a badder infectiion(incontinence) and a sinus infection. Could life be any better for me. Oh yeah mom had a bright Idea to remove our ramp that I use to get in and out of the house. She did put upa railing but i have been told not to put all my weight into it. so not sure how i am supposed to use it. I can go back to my crutches. which i guess i will. I dont think my mom gets what the furture maybe with CIDP. My understanding is that it may progress and i could end up back in a wheeklchair.*(hopefullly not) Well i guess then I will end up back in a nursing home like before when i was paralyzed with GBS. May need to make an appointment with my neurologist. when he returns from vacation. Maybe he can help us understand my future.
went to the new neuro on wed spent most of the day there . had emg didnt go so well they checked my breathing breathe in ok out 61 percent normal 80-120 had a talk with him he did a check blood work to see if i have some gene . he thinks its heredatary and not cidp he also believes that when the other dr put me on all that prednisone that the diabetis it caused (uncontrolable sugar levels) triggered it . i tend to agree with him. i was fine then it got bad all at once . its gotten a little better since ive been off prednisone i dont take insulin at all anymore and according to what i eat most of the time i dont even need my glimapride. i think if i ever get active again i wont need anything. the problem im having thats driving me crazy i have more feeling in my feet now. i do have a ulcer dr calls it some kind of bunion do i have a small hole in the bottom of my foot about 1/4 inch deep every 2 weeks the dr carves the callus off it. but the problem is pain i tont have the tingling pain its in front of my ankle or should say foot deels like a severe cramp it comes on everyday after 4 between that and the foot pain its almoost enough to make you cry. i take a 300mg gabapentin 2 50mg tramadols it does nothing after an hr or 2 of the agony i take a 7.5 lortab a while later it finally subsides it feels better when i stand on it. alout of nites i have insomnia from it . hurts bad enough it gets tender all the way up to my knees. after i do fall asleep sometimes its 5 in the am when i get up im not worth a darn from the pain killers ect. im not depressed anymore but the dry skin and the acne is terrible i need to walk more to get my streanth back back but i cant my foot will start hurting then thats it for the day. i guess pain is good means the feet are getting more feeling but i cant take this to much more i know these pills are hard on the kidneys especially when 1 of mine only works about 20 percent wish i could find something stronger that would take less of a dosage to kill the pain. im not one to get hooked on pain killers ive been on lortab about 6 months and dont abuse it by no means there were days up to a few weeks ago where i wasnt taking anything
getting ivig still no change yet. nurses say be patient it will come. I am 4 times a week this week and then 2 a week e very week. now i get a week off every other week. still really tired all the time. My friends and coworkers have been great. someone tries to come and sit with me everyday. i am going to start driving my self to treatments starting tomorrow. they didnt want me to until i knew how my body was going to react.
Update on me- I went to my neurologist yesterday and he tells me he is very optimistic about getting me stable. I asked him about Physical therapy and he said that if I am motivated to do it then he is all about it. Keep in mind while I am asking these questions his pager is going off (his partner was out of town so he was having to cover the hospital, which is why I love this doctor even when he is extremely busy he takes the time to answer each and everyone on my questions and isn’t in a rush, not only that but he is the one sending me to the University of Kansas.) The Doctor is also going to try and take me from 1 IVIG treatment every other week to 1 IVIG treatment every 3 weeks. That’s another reason I consider myself lucky from what I have read a lot of people’s IVIG takes 5-8 hours mine only takes 2 hours. They start off slow at 48 ml then increase every 15 minutes for the first hour until they reach 288 ML per min? I have about 400 ML infused not sure what that translates into for how many grams of it I am getting. I continue to see improvement though my right side is definitely stronger than my left. I look forward to going to KU and physical therapy!!! Thank you all!
i am receiving IVIG yeah! 4 times a week every other week for 3 months. having a tough time right now but everyonee assures me will get better. havent driven in almost two weeks but am driving today. Also came to work for a little while. I am wiped out definetley goin to take a nap this afternoon.
Great News from Chicago! I am off all my meds!!! I did have a improvement on my Nerve conduction!! Which I knew I would! My nerves are still healing. As Dr. Sufit said…You have one of the crappies set of nerves we have ever seen.:p This is the first time in over 7 years that my nerve conduction had an improvement! Yeah! I am still feeling OH so good! I am just excited about life! I can not encourage people enough with CIDP to check out SCT. Words just can not explain! It is hard for sure to do SCT but worth every sec of it! OH…. I am wearing shoes with a heel and closed toe shoes now too! Never could do that before! I will write more….I am heading out.Feel free to email me too at [email]firstname.lastname@example.org[/email] I am also on facebook!:D
Last night i did not take the ambian but did take a generic valium, still took two hours to fall aspleep but I did sleep all night. The two hours prior to sleep, instead of fighting it, I listened to a book on tape while laying bed. I woke refreshed. Yesterday and Wednesday were relapse days. I upped the repetitions of ALL my PT exercises and paid dearly. Must learn baby steps toward recovery. Must learn lots of things. Again, thanks to all of you for your kownledge and advice. Still waiting to see what today may bring.
supossed to go to urologist for a check in before lithotrypsy. Had a barium swallow done this morning seems there is something wrong withh my stomach. I am still in a lot of pain. numbnmess and tingling pretty strong still. IVIG after stone is gone and they figure out what is wrong with my stomach( had three pre ulcerous spots before GBS) still doing okay as far as my bladder. I go as often as i can.
stone still an issue. supposed to have lithotrypsy again. incontinence still an issue dr upped my vesicare. (the gel made me “crazy” couldnt stop crying) back to using my crutches full time. my aunt died so that isnt helping the crying issue, funeral is in atlanta we leave tomorrow and come back saturday night maybe sunday am. i am not sure i will be able to handle this. Still set to have ablation on monday. seems like a lot going on at once.
still having stomach issue. it really hurts. keeping me up at night. going to call doctor tomorrow. still no idea of when kidney stone will be taken care of. I am going to call that doctor tomorrow as well. Supposed to have an ablation done next friday. (way to stop my menstrual cycle) My mom wants me to postpone it because she is supposed to go to IKEA with some friends that day. WHAT???? I dont know what she is thinking. I am going to have it done anyway and see if my friend can stay with me or if i can be admitted to the hospital overnight.IKEA really? if i dont do it than who knows how long vwefore the doctor can schedule it. My cycle is such a problem to deal with right now seeing how my hands are numb besides i am 40 years old and not going to have children so why mess with it. I went without it for a long time when i had GBS the doctor just wanted to see if it would come back normally. It has so now i can stop it according to the doctor.
stone still there. appearently only chipped the stone with the first round of lithotrypsy so have to do it again. still havent started IVIG. 1 waiting on stone then there is a matter of paying for it i am on medicare. dr is trying to get it paid for. bladder still an issue now they have given some topical gel that is supposed to help. i am very frustrated. this is not helping my depression issues to say the least.
I’ll find out in less than two weeks if my work place will offer me 10 more hours per week. The meeting w/my supervisor was professional as can be. The agency will be hiring a part time worker (carrying the heavy stuff that I can’t do for now). Next year, I’m very confident of lifting 50 pounds but will it be too late? Even though I pass the grueling 6 hour driving test & evaluation at a cost of $555.00 last year (no help in offering to pay to off set the huge fees from my agency), there is still liabilty issues on my mobility during driving time for the agency. When the door slams in your face again, the true mental & physical spirt of a human being must suffice again against all odds.
The person who took over my job when I was ill was terminated from his job today. Alcoholism played a huge part (along w/his pancreatis, excess smoking and bad eating habits). The meeting went well w/the Executive Director. All the cards have been dealt. I’m ready and able to kick down the door for more working hours now. On their side, it’s always the issue of Worker Compensation/Liability. On my side, I have the ADA, Union and need be, lawyers (discrimination law suit?) and my wife to end this madness. Great script for a future movie but finally the “underdog” shall prevail! I’m actually beginning to feel free and normal again (like the good old days before GBS got in my way). Not sure how many other GBS’ers are reading my story. Hoping to get one feedback from anybody to get a extra boost to forge ahead.
still wearing afo in left side. CIDP causing weakness so i am back to my crutches. have a kidney stone going to have lithotypsy next week. Once i pass the stone they are going to start me on IVIG. I am a little anxious. a lot going to happen in next couple of weeks, will try to keep you updated thanks amy
first on list for when machine comes back in the area.(for the kidney stone) vesicare still doing its job yeah.still have upper respiratory infection z-pack and prednisone didnt do it i will call dr tomorrow to see what else we can do i just dont feel well. i hate being sick. i did go to work today so at least i got out of the house. not strong enough to drive so my dad is my driver. thee tingling and numbness is getting stronger hopefully once i get those issue under control it will subside.
went to my PCP. he did blood work. blood aslso showed up in my urine. He is sending me back to the urologist. He thinks maybe kidney stones. He started me on an antibiotic as well. I h ave to take it 4 times A day. going to trhe beach with work tomorrow for a conference for two days. My doctor said to still go. He wants to see me back to his office in three weeks if not better come in sooner.
going to the Y three times a week. finished wi th PT for now. doing water exercise and then the gym, going to hire a personal trainer. my stomach has been bothering me. went to the doctor and he said must be leftover from the flu. then i stopped by this week and told him it was still hurting and he is scheduling me for an ultrasound and a more thorough blood panel. it is killing me. They arent sure if it is my stomach or something else. just a pain in my left side. i had my gall bladder removed a few years ago and when it started to hurt it wasnt in the righ t place for the gall bladder so they kept dismissing me by the time they went to remove it it was just goop and in the wrong place. so iam am a little leary of pain in my side.
still doing water classes, still like it. now i wear my tennis shoes in the water, much nicer on my feet. having trouble with stomach pain at first thought it was leftover fro m the flu. now doctor wants to do an ultrasound and a more extensive blood panel. my stomache is killing me especially after i eat or drink anything. it hurts to even lay down at night. am using my sleep apnea machine no changes so far. go see my neuro in a couple of weeks to follow up with symptoms and to see if any are resolved by using the machine.
MRI came up clean. stil no IVIG treatments. Dr sending me to sleep study. i do h ave apea but could it really be causing these symptoms that just so happen to be the same as CIDP. I guess it could nt hurt.No driving but am doing PT quit going to Y for now. Mom wannts me to start back next week. the more i sdo the more tired i am. Yeah I know makes sense but i want to know when will it get easier. I guess from what i read it wont. It will only lprogress especially since i am not getting treatment. I suffered through GBS and was told i would make a full recovery now they are saying CIDP will progress to what extent? I guess i will talk to the new neuro but am i ready or my family ready to hear the outcome. DOnt think so. AI am more readyu today than lmy family but that could chnge tomorrow. TOday i am clear thinking but who knows what tomorrow will bring.jojo
incontinence is getting worse. will try to call dr tomorrow. cant get my mom to see the urgency of my situation, hands are really numb and now i dont know if it is my mind or my body but my chin feels numb. my mom thinks everything going on is because i am laying down more but i am laying down more because of everything going on.
still pretty numb. went to the beach with the girls. No beach actually not evena pool. we went down to go shopping and to go out to eat. I am exhuasted. I did ge tto sleep in each day but ia m still tired. Sat and people wathced in stead of shopping. dr called while i was gone going to call tomorrow to see why. i hope it is to get in earlier and not to postpone my appointment. my head therapist called as well. I hope she is not cancelling and is just calling to confirm my appointmrnt,. didnt use my sleep apnea machine while i was gone go back to using it tonight. i guess i have been not so attentive to my condition. I wanted to go to the beach and try to forget my troubles. Sorta did. But now that i am back it is back to reality.I go back to pt then work tomorrow. still not driving.mom and dad are ging to dc to my older sisters for 4th od july. I decided to stay here. #1 to be able to rest # 2 to give my mom a break. My little sister is going to stay with me at my house.
numbness still progressing am resting more but still doing pt. Quit driving altogether for now.(really frustrating my parents as they have to drive me around)will talk to my mom about going to see a different neuro. and will try to get some relief. thanks for all the responses.
still patiently and impatiently waiting until wednesday to talk to my doctor. My mom has me walking around without my AFO and a walker in the house. Makes me very uneasy. She had me at the movies today and church and breakfast(it is my sisters birthday) I am really tired and tingling. Wednesday is the day i can talk to dr but it also happens to be my 40th birthday. So it will be an interesting day to say the least.
still experienxing numbness but back to my regular life duties(work, driving etc.) No more talk of an ankle fusion now i am back in physical therapy to build up my tendon to do a tendon transfer from the back to the front on my left foot.I wish they would just fix it my foot has a callus on the bottom and it hurts after walking,.Now they are saying i can take my AFO off of my right foot and walk without it in therapy. i guess we will try it on friday, my first day in therapy.
I’ve been out for awhile. Here’s the latest.
I had PE treatments last Thursday and Friday. They went well. Saturday I had a stomach bug of some kind. I still am not 100% back from that. The Azathioprine hasn’t seemed to help much yet.
My CIDP flared up late last week. I had been feeling crummy for a few days. Lots of gas bubbles being generated in me.
I need to do my 1st month labs after beginning the Azathioprine (I will try again to get the blood drawn this Wednesday. The Baylor College of Medicine Lab couldn’t seem to get it together last week while I was in the neighborhood). But I’m wondering if the gas bubbles are an indication of my digestive system reacting to the Azathioprine? We’ll see what the labs turn up.
I learned recently that another long time friend was diagnosed with CIDP last year. She is the same age as me. Really bizarre. I lead her to this discussion forum and she really learned a lot from the threads. I hope she joins the family here. She’s really a sweet person and you’ll enjoy her.
In Christ, Gary
Hello Everyone, I will come back with more of an update soon but wanted you all to know that my son is really getting close to 100%. His bladder has fully recovered…no wet nights in almost 4 weeks! He was discharged from PT yesterday and only needs to do sports specific training. He was also fitted for shoe inserts because he now has a mild foot deformity that is effecting his running. It may improve or he may need to wear them but we will take that after everything he has been through.
He had another set of MRI’s last week and we see neuro tomorrow and will see if they showed anything 3 months out that they could not detect initially.
Then, we have an appointment at Johns Hopkins with Dr. Kerr on June 10th. We are hoping that when he reviews his case, we may get some idea of his diagnosis and prognosis. We know it is was not GBS because he developed clonus, a babinski sign and mild tone and this would never happen with GBS.
Thanks for all of your help and support. I think we may be seeing the light at the end of the tunnel. He may even get to play for a little bit of his last two hockey games of the year.
Hope you are all doing well.
went to my primary care for pain meds and he sent me to another ortho guy. seems i sprained my foot as well as broke the toe. No driving for at least another week. finally got my mom to agree to pain meds. I cant imagine what it feels like if i had full feeling it hurst really bad. THe second guy said wear my brace it will stabalize my foot. It will take about 4 wks to heal.
still having occasional accidents. I am doing the excersises that i was told to do. I go back to the therapists tomorrow. I just dont think this is working. I am extremely tired today. Having trouble thinking clearly. Mom still thinks it is laziness. I go as soon as i feel the urge it just is too late. I guess i stayed up too late yesterday at a superbowl party. It was fun but now I am paying for it. My mom and dad are going out of town next week and a friend is going to stay with me. This should be interesting. Its not like she has to really take care of me more like just so i am not alone at night. She said she might bring her dog. that would be nice i miss my dog. my mom mentioned something about getting a dog. she keeps bringing it up. that would be nice.
went back to therapy today. Had two accidents this week(not counting today) she showed me some more exercises for my hip seem the muscles are tight on the left side and is causing pain. I also have the flu agaiin!! Ya know this kinda sucks. Just when i start to make head way i get sick again. I f I am still sick tomorrow am going to call the doctor. My mom wants me to wait it out but i am scared to last time i had a relapse, i already feel weak and am having trouble walking. thanks for listening to me my family is getting tired of it.
Thursday I went to the local dentist and she said I needed a root canal in #18 and recommended an endodontist who she wanted to put in a post to strengthen the tooth for another cap. I had to rent a car and drive an hour to get to him in Allentown, PA. He had not heard of GBS – good start. I explained that I wanted Carbocaine. He gave me that and then asked if he could put a few DROPS of Lidocaine on the tooth. I said OK – because he said DROPS. Then he comes at me with that humongous needle and I said, “You said DROPS!” He said the epinephrine would only last a few seconds. I think we GBS sufferers really try to protect ourselves and the medical profession makes it difficult. Anyhow….after an hour of doing the root canal he tells me I shall have to come back for him to finish it – (he only allows and hour and 1 5 minutes per patient.) BUT he said he had serious doubts that I could get a cap on it – there was not enough tooth there for a molar. NOW he tells me!!! WHy didn’t he mention that before he started? I am trying NOT to put chemicals into my body/nerves and he wants me to come back if I decide to keep the tooth and get more lidocaine/carbocaine.
He suggested getting it pulled. But he was going to only charge me $200 for the visit if I decided to get it pulled and not the $895 if he completed it. What about us risking our nervous systems to undergo these procedures??
I decided to try and keep the tooth so I have to go back to him next week. ..knowing what I have to go through AGAIN. I had been to an endodontist is Tampa and he was painless and gentle and looked just like Tom Sellick!! Why can some dentists give painless injections and others can’t??
I started seeing a new PCP this week who is GREAT! She gave me some samples of Lunesta, which works okay but leaves a horrrrible nasty taste it in my mouth. I can tolerate this as long as I am sleeping. It worked okay – I still like the ambien CR better. She asked me to keep a food log. I am very consciencious about my eating, but she is thinking that perhaps I am getting stimulated at night because of some nutritional issues. I tend to become really lethargic in the afternoons and my activity level dips. I am careful not to nap – but often cant find the energy to do much more than veg after a full days work. Maybe if I eat more energy efficient foods, I can do more later in the day to wear myself out. Also, I switched from Celexa to Welbuterin. Celexa was helping me with some depressive symptoms – but I was feeling pretty flat and unmotivated. Because Welbutrin is an SSNI as opposed to an SSRI, it is a little less sedative. Maybe more activity will be my pathway to more sleep! We will see. I am excited about this though! there is always HOPE!!!! I will keep you all posted.:)
Hi Linda thanks for your update! All morning yesterday, I kept checking and checking and figured they kept you in the hospital to do the surgery right away. Well now you know, they can help you and there is hope for a good outcome. Stay strong, hugs and prayers to ya. Keep us posted.
I felt really crummy yesterday and last night. It has been 3 weeks since my last PE. My sensory function (tingling and numbness in fingers hands, arms and legs) began declining again 6 days ago. My motor function in my fingers began declining again 3 days ago (Monday), but not significantly, yet. Monday night I hardly slept, I had a feeling of fever and heat in my extremities throughout the night. I’ve also felt heat in my knuckles and feet. Last night after exercise my right foot/leg didn’t function as well (felt like I’d pulled a muscle in my calf) and I had small muscle twitching throughout my legs and hands.
I realized last night that I had not taken my sublingual B-12 since Monday so I downed 4000mg last night and 3000 more this morning. (I also got my B-12 injection a few minutes ago. My sensory tingling is better now than it was last night. (related to the B-12???)
I reported my decline to the neurologist yesterday and asked for the “booster” PE and it’s supposed to be scheduled for tomorrow morning.
I go see the neurologist tomorrow afternoon and will discuss additional treatment (press for the IVIG) at that time.
Lessons learned: the effect of my PEs seem to last ~2 weeks; PE alone isn’t the answer for me; I seem to be able to feel the onset of the antibody flare up of the imflamation (fever and heat sensations)
Thank you for sharing Emily, educating each other through sharing our personal experiences currently seems to be the most effective way to elevate the quality of our DX, treatment and care. [B](We (all of us) have got to find a better way to get “the CIDP message” out to or educate both the medical community and the general public.) 🙁 [/B]
I will post more Saturday (PE usually wipes me out so I don’t think I will be up to it tomorrow.
Have a blessed day… 🙂
After my visit to the neurologist today I am going to have a spinal tap done and a test that I can’t remember the name of. This test is like an emg for the head and spine. I will also have another blood test.
The doc said this is leaning toward a type of CMT, maybe.
I will have the spinal tap in two days. SCARED:eek:
I’ve been out awhile so I thought I would provide an update …
I’ve now had 5 PE’s (5 in 7 days – they gave me the weekend off). I had a B-12 injection and left for Seattle to embarc on an Alaska cruise the day following my last PE. My worst 🙁 CIDP day so far was the next day in Seattle before we boarded the ship.
🙂 More on the cruise at a latter date 🙂 .
The good news 🙂 is that the PE’s seem to have worked. I have regained significant motor control and strength in my fingers, wrists, toes and feet and I am seeing daily improvement. The sensory has improved significantly as well, but sensory seems to also wane somewhat throughout the day.
I have a follow up with the Neurologist on September 5th and he plans to schedule a “booster” PE afterwards. Also we’ll talk at that time about the next course of action (IVIG probably – my glucose test indicated diabetic so steroids are now an unpreffered treatment that will require hospitalization if we go that route). I have an appointment with an endochonologist to follow up on the glucose test…I’m not sure I believe the diabetic diagnosis…
Hello, I thought I would give you an update from my appointment On Thursday.
Dr.Gibson is a great doctor, very understanding and straight to the point. She had an intern and 2 med. Students help with my case (the more the better as she stated). She did say she wished she saw me sooner though. But when all was said and done and after her and the other three concluded with my file. She returned to say that it isn’t what they suspected so not GBS-CIDP. She is unsure of a diagnosis at this time but reassured us that we will find out. Apparently, I am a unique case. She had one patient 25 yrs ago with close to my symptoms. With the EMG I don’t have any response from my knee down, and the one with the needles (cannot remember what it is called), I have decreased muscle in my back. And muscle fasting in my thighs.
She did want to admit me on Thursday, but there Neurology center is full. She has faxed my GP to start the IVIG treatment, she said we have nothing to lose and I would notice if it works. I am to start this treatment sometime next week. The good thing is I can get it done in Campbell River. Since she has undetermined diagnose she is referring me to one of her colleague’s for another EMG and muscle biopsy. That is in September and on the same day I will be having another MRI (full spine and body) apparently my other ones were just partial MRI’s and then she will have her own to work with. I am not sure if it will be an out patient, 1 day, or I am admitted for longer. She is getting back to me next week with more details and times.
On a bit of a bad side, my health benefits said that the Neurologist in Victoria has said all my tests are coming back negative. That there isn’t any “objective findings” to pursue my LTD. I told them I had a second opinion and they will wait for that to make a final decision. We discussed this with Dr.Gibson and her exact words were “you are paralyzed, you tell them to fax me the “information request” and I will call them if I have to”! That was a shocker to me, but it was a relief to hear her back me up.
So we had a long day…but I believe she may be “the doctor” for me. She even called me the next morning. That is it for now…I will let you know what the week will bring. Keeping my fingers crossed.
On another note I am having troubles getting off the toilet. A few times I have had to wait for my husband to come home from work to help me up. Any advise for this would be great.
Thank you to everyone here.
Things are much better! Much less fatigue and some return of sensation including pain which the OT was pleased with. She was dismissed from OT one week and PT the next. Still some problems with balance while eyes are closed and some problem with fatigue and still some loss of proprioception. MD says b12 is up closer to normal so I guess recovery is now a waiting game.
Thanks so much to all of you who answered and PM’d me! I came here feeling very lost and frustrated and got some comfort.
Thanks sooo much!!
BTW I am from TN for the gal who asked in another post
Thanks for the update; I was thinking it was probably CIDP when I read your first test, but didn’t want to mention that yet. I am glad you are finally getting the proper treatments & that they have worked so well for you. That probably means you have the relapsing/remitting for of CIDP & not the progresswive form. About the fatigue, you will just have to learn to live with that & get the proper amount of rest and sleep. For me that means 10-12 hours per day, then I feel almost normal. Actually, after over 6 years with CIDP I am not sure I even remeber what “normal” felt like…
Thanks everyone!!! Here is update #2.
Went to my regular neuro and this is what he said:
1. No spinal tap is needed – not now, not later.
2. He has no intention of testing me for GBS – says i have absolutely no symptoms of GBS. (Up until this point, both he and my previous neuro both said they think its GBS). Go figure:rolleyes:
3. Asked for a CPAP machine because my breathing is getting really scary (intermittent severe episodes). He said, “A CPAP is for people who have difficulty breathing all the time, and yours is only sometimes, so there is no need for you to have one”. So, i asked him what i am supposed to do when i am suffocating and unable to communicate. He just said, “You aren’t going to go into respiratory failure”, and that was that.
4. He told me that my breathing problem is because i take anywhere from 1 to 4 Vicodin a day, atleast 6 hours apart, for horrible head, neck, back, and hip pain. “that is a very strong respiratory supressant”, he said. I was almost in tears at the thought of him blaming this on me, when im the biggest prescription pain med freak in the world! I tell everyone how dangerous they are because ive watched them lead to people dying, going to prison, losing their families, their careers, etc. I have even talked to my docs about the vicodin (which i only take now because you cant take ultram when pregnant). I have monitored my symptoms both with and without the med, and ive seen no correltion between vicodin and my shortness of breath. So, his solution is, “stop taking pain medicine” and he scheduled me for a sleep study for 3 months from now. (Not sure what sleep has to do with the breathing? It happens when awake.) Fine. Whatever. I’ve taken one Vicodin in the past 2 days, and only because i was absolutely miserable and tylenol didnt work. He’ll see he’s wrong.:D
5. He scheduled me for a tessalon test (for myasthenia gravis) for 3 months from now. The other Myasthenia Gravis tests have been negative, but i guess this is the most definitive one.
6. That’s all he did. I didn’t ask him about U of M because id start sobbing if i even opened my mouth. I had called U of M earlier and asked them how to go about getting an appt and they said my neuro had to set it up. I told his staff that before my appt, but he never even acknowledged it. Rather than crying my eyes out in front of him, i though id talk to jerimy. If i have to, i’ll talk to my neuro again later, when i can control myself.
7. As soon as i stepped out my neuro’s door, i started sobbing! I cried for atleast an hour. I called my husband, crying, and told him everything. First, though, I told him that i just needed him to listen, not to fix it, that there was nothing he could do except listen. i told him that he makes me feel so much better just by letting me vent. He vented, too, so i think we both felt better. He usually has nothing to say, but this time he talked alot. We both got a lot off our chests and i know i feel a lot better. First, i was deeply sad, then i was sooooooooo mad! now, im like, whatever dude! Be stupid! You’ll see!
I’ll message you folks who went to u of m. thanks!
I am happy to report that Brady has made a full recovery. He came home a couple of days before Christmas and by New Years was able to ride his skateboard and even went to the sand dunes and rode his quad. After returning to school, he did have some struggles with handwriting and had seemed to develop a problem of never being able to sit still or pay attention in class. His grades did drop and we are working very close with him to improve. As far as physical limitations, I would have to say we were very lucky as Brady had a very quick recovery, going from being on a venilator for a week and unable to walk, move or talk, to within 2 weeks back to full mobility. I truly believe and contribute that to the early diagnosis and the incredible medical team at Phoenix Childrens Hospital, and without a doubt the medical direction of his neurologist, Dr. Allan Kaplan. I hope this gives hope to anyone reading this, whose loved one might have been recently diagnosed with GBS
Thanks for the messages. My brother is doing very well. He moved into a rehab center about 10 days ago and started improving rapidly once he was there. He went from barely being able to stand with the help of a walker to walking 200 yards(with the walker) in the span of a week. His strength and spirits are really up. He still has some numbness on the right side of his face and a strange feeling in his hands and feet, but overall he is doing incredibly well. He went home today and is going to continue his rehab from there. He obviously still has a long road ahead of him, but we are all very thankful that he is making major progress.
For what it is worth, my brother really fought aggressively against this disease. He refused pain medication whenever posssible… as he didn’t want it to weaken his body even more. While in the hospital, he constantly asked to have his limbs stretched and work on range of motion exercises. He had family give him massages throughout the day to keep blood flowing to limbs. When he got to the rehab center, he tried to do a little more than was asked of him IF he felt his body could handle it. I guess what i am trying to say is that he tried hard to control what he could control. He gave himself a goal to make it home one month after he went into the hospital and he almost pulled it off. He went home today(33 days after being admitted). He still has along road ahead of him, but I am really proud of him for fighting this disease so hard.
All of your advice and thoughts and prayers have been extremely helpful as well. This forum provides a great service and has provided great comfort to our family.
Thanks to all of you! I’ll continue to keep you updated.
Hello all, I just wanted to say hello and give an update as to my progress.
I went back to work in March on the midnight shift. It went well,except my feet would burn and cramp in the middle of the shift. So I would elevate my feet and that seemed to help. Now, this month I am only working saturday and sunday on a hospital job ,and I think that it is perfect ,for my feet still have issues,not enough to stay home tho.In May I am suppose to start three school projects.Its been now alittle over 5 months with only the feet issue left. Sometimes my hands fall asleep while in bed.I am so thankfull to be back to work. I am praying for those left here, with debillitating symptoms, that you may find relief and get back to work in some form or other.
I forgot to say that my husband has improved from the time he was diagnosed in July 2007. This has been on IVIG alone. He was only on Imuran for the two weeks in December. After his high temp. etc. in December he deteriorated back to square one almost. He has an atrophied right hand, and prior to IVIG he could not hold a cup or eating utensils. After starting IVIG in September 2007, within one week he could hold a cup and use utensils–but the atrophy is going to be permanent likely. He also had foot drop of the right foot prior to the IVIG. After the incident with Imuran, he lost the gains he had made very abruptly when he spiked the fever. It took two sessions of IVIG to get back to where he was prior to taking the Imuran. In April he will have his EMG and nerve conduction tests repeated, and if he hasn’t made considerable improvement that is measureable then the neurologist will be pushing him to add another drug to his regime. He refused to take Prednisone due to the side effects and that was when he was put on Imuran. He says Prednisone looks good to him now
[QUOTE=deem]Hello, thanks for the advice guys. Mark, I understand what you are saying – about it taking a long time to see if the Imuran will work. When he mentioned it before, I had figured he would prescribe it if I didn’t respond to prednisone and IVIG. I do understand that I will be tapering down to a lower dose of prednisone and the Imuran may be the key to allow that to happen. I had hoped that I would be one of those who would need IVIG and nothing else. He said in his experience many people need a combination therapy. I guess I fit the profile of those folks. My disease was pretty aggressive. Maybe it is not worth risking a relapse?
Laurel, he wants me to have blood work every 2 weeks to monitor things. I am sorry your hubby had a reaction. What is his treatment plan now? Is he improving?[/QUOTE]
He is only on IVIG monthly right now. He gets 1 Gram per kilo of his weight monthly. The neurologist wants him on Cellcept starting in April. Our game plan is to refuse the Cellcept because of similar side effects as the Imuran, and not enough long term studies on the efficacy of either of those drugs. She is trying to decrease the IVIG due to its cost. So if pushed against the wall, my husband will agree to pulse steroids. He seems to be improving with just the IVIG thus far. There is at least 50 years of steroids being used and the side effects are all well recognized and reported. It is our belief that the use of Imuran and Cellcept haven’t had enough clinical trials for us to feel comfortable with going that route. My husband says he can understand organ transplant recipients taking those drugs as it means staying alive for them, but with his CIDP and his experience with Imuran he feels the treatment is potentially worse than the disease. His experience with Imuran was very bad. And that has coloured our views on Imuran and Cellcept. But from all my reading, it seems that Imuran and Cellcept only work in about 20% of the people taking it so that seems low success for such high risk.
Just a cautionary note with the Imuran. My husband started Imuran in Dec.2007, and had a bad reaction within about 12-13 days of starting it. He began to experience chills in his back on day 10 with no fever, on days 11 and 12 he complained again of the chills in his back and no elevated fever as we kept checking it. On day 13 he began spiking a temperature and by the time we got to the hospital it was 104 and they said he had sepsis. He was in hospital for 4 or 5 days treated with antibiotics. His blood work was quite wonky with elevated liver enzymes, low hematacrit, and low red blood cells. It appears that the Imuran began causing some bone marrow problems. It took him nearly two months to recover from the 2 weeks of Imuran. It seems that most people tolerate Imuran quite well, but there are those like my husband that do not. Pay careful attention if you start to get an elevated temperature and if you do go to the hospital and explain that you are on an immunosuppressant. When we went to the emergency they whipped my husband in so fast his head spun when he explained that he was on Imuran and they found his temp to be 104.
hi everyone, first of all someone asked what treatment juanita was given….ivig. she is still in a coma, the mri results were good, her breathing is better, a spinal tap was done on thursday, we should get the results by monday or tuesday. her sister verna told me that the doctors mentioned locked in syndrome, i had never heard of that before until someone here mentioned it, she has the doctors stumped and its great that i can pass information from all you guys on to the family. i thought it was very rare to go into a coma from gbs, but that does’nt seem to be the case….thanks for all your prayers and great information…i have so many questions…how long will she be in this coma? what will happen when she wakes up? what should we expect? thanks again…all of you..
[QUOTE=cidpvic]Thanks, it went great. I realy wanna make this work. Hopefully I can keep this up!!! what did you do????[/QUOTE]
Hi, You can do it! I went this morning to the YMCA to look into their water programs. I was taken to the pool to talk to the “Water” director and on the way the woman told me about a member that had GBS and did the water classes and that she could see an improvement in this member every week. So while I was talking to the director, in walks the member that has GBS, she introduced herself and we chatted a bit. She wished me well and I turned to the director and said, where do I sign up? 🙂 So back out at the main desk a woman gave me the info and a free week pass to try the class and suggested another class that they offer, a Range of Motion class. The GBS member came up to me and said she takes that class too. One was going on as we talked, looked like I might be able to do that too. Soooooo I start the free week on Wed. with the pool class, it is called Arthritic swim, meets M, W & F. Hopefully it will work out.
Well my surgery is over and it went well. I didn’t have any issues with my CIDP. I did stay in the hospital one extrs night for better pain control. I stayed on the IV medication longer. I am releived that it is over. The next step for me is radiation when I heal.
I want to thank you all for your thoughts and prayers. I do believe in their postitive influence. I feel blessed to have found all the support from this group.
Just a short update – recovery still going well, although slower now. They say that the last bit takes the longest. I’m now totally on my feet and don’t need the canes any more, although I would like to use them, but my wife said I don’t so she hid them. I do use the soft anke braces still to walk any distance. We went to Mexico on holidays and I did a lot of walking, the feet got a bit sore but I survived and the walking improved. I even went snorkling a few times, had no problem with it at all. The lower legs and feet still have a way to go but the muscles that bring up the toes are starting to work a bit again. I just have to be patient and be glad with the improvement to date, many never get this far.
Helga is finishing her 3rd day on the IVIG and the numb feeling is somwhat fading end more of her “ususal pain” as she calls it is getting back. Her toungue is getting back to normal so we are more optimistic and hopeful she is getting better and hopefully winning this battle. We just take this a day at a time and if the ivig will go well… we are planning on going to a big concert tomorrow and I will then borrow her for a couple of hours and then get her back to the hospital right after the show. But now the weather forcast isn’t to helpful as they tell us there will be a big storm tomorrow so I don’t know yet if I will be able to go… as I have to drive over a high mountain to get to Reykjavík(50km away) where the hospital(and the concert) is. Anyway.. that is a problem I look into tomorrow:D Just wanted to let you guys know and thank you for all your kind wishes.
Helga sends her love.
Until later… Steini
Just try to take one day at a time right now. When you’re feeling really down, let your son tell you about Santa and Christmas and see the excitement shine in his eyes. That’s a real spirit lifter. I truly understand how you feel right now. My mom came home from the nursing home the day after Thanksgiving. She’s aged more now, in depleted health and she could die within a years time. Her life is laying in bed now.
After the holidays, when you’re ready, I’ll teach you how to post photo’s.
I am now back down to just basically infant rice food. Trying to eliminate everything..but supplements to keep me “Going”. It takes all energy to eat and use restroom – husband has to carry me as I am completely limp – neck, arms, feet…obviously fingers work.
I came down with head cold about 10 days ago. 3 days into the cold my symptoms became noticably flared up. I can’t remember what day I actually lost ability to walk. I tingle in legs/arms/face. Cannot open mouth much. I need assistance with any movement. Very weak and can’t communicate with body- I’m hoping this has “peaked” and I will get better. This is FAR worse than my initial atack. It only affected my legs.
I have no choice but to take it easy 🙂
Fear dr.s and hospitals…Frustrated wtih traditional medicine…..not worrying until problems breathing, right??? I can’t speak well, but no breathing problems…(all hospitals told me it was psychological when we have proof now that it’s not).
Had very limited sucess last spring with IVIG’s. Waste of time and money.
Feel like it’s in God’s hands now…
Just a short update. I finished the first of four weekly treatments with Rituxan. It took about five hours for the 800 mL containing 800 mg of Rituxan, a one to one solution. Everything went well with no reaction at all, except see “on the lighter side, new thread unexpected side effects of Rituxan”.
Since I tolerated it well, next week it will go a lot faster about three hours. The solution will be more concentrated.
Cheryl, no we don’t have cats but see on the lighter side.
I hope you will still come back and read these because we are still saying that we do care, some of us just respond late. I wish I could answer every post, but some things I can’t relate to and I can get 100% overwhelmed by my own life, having severe CIDP and being caregiver to an invalid mother. I think many of us battle three chronic disorders; CHRONIC SYNDROME, CHRONIC FATIGUE AND CHRONIC STRESS. Don’t worry that we won’t understand your post, many times when I am struggling I feel like no-one cares.
Will a hug help?
Nate’s nurse told me today that he has Enter Coli. Its a variation of E.Coli. Deadly stuff.
It shuts down kidneys. No wonder his were so slow.
His doc says its due to him not being able to empty his bladder often enough to chase that stuff out. It started growing and traveled up the tubes into his kidneys.
His blood pressure still keeps going up but now his heart rate is going too slow. Normal is 78 or 80, his is 49 and lower.
They are getting him a cardiologist to check him out.
If its not one thing, its another.
If all goes well, he should be going home in a few more days.
He’s very uncomfortable. His kidneys hurt and so does his head for some reason.
I am again wondering if he will ever be ok again.
Hi sorry I haven’t been on to give an update He found out last week that he has had a stroke while he was in icu that has affected the right side of his brain.The docs think it might have been caused by the ivg and the fact that he also has chroyns.Has any one else experienced this?Also last week his phisio lady told him he might not walk do to the drop foot they have tried splints and she wants to do botox on his ankles but I am not sure if that has been done either.This has been one heck of a week and it is getting tough to keep his spirits up.Everytime I turn around they are dropping bombshells on him when no one is around and leaving him to cry.Here’s hoping next week will be better.Thanks again for letting me get this off my chest he asked me why I don’t ever cry and my response was just not in this room Take care everyone and I hope you all have a great week
Well, I saw my neuro and after a lengthy and emotonally exhausting appointment, I consented to continuing metho because our goal is to not let the CIDP take anymore of my strength than it already has. We set a time frame of three more months to see if the metho will do anything and then decide if its a viable treatment. In the meantime he upped my dose of folic acid which will help in the repair of the good cells that are being destroyed. I guess its a good thing to keep going because I am definitely getting weaker. I am losing strength in my arms and torso and have had to really cut down on my daily activities. It helped to reevaluate the situation and put things in perspective. I am grateful for this site and all of your knowledge too, because I was also able to ask more educated questions and have in fact prompted the neuro to test me for what varient of CIDP I might have so as to get more specific info. and treatment. I also was able to get them to arrange PT for me so I can get supportive ankle braces and a daily exercise routine. I was’nt able to get that before due to the kind of insurance I had prior to getting on my spouses insurance. So, at least I have a finite plan. By the way, I encourage people to go see the movie SICKO by Michel Moore. I assure you you will relate to it. I would appreciate others thoughts on the issue. The movie really validated some of my experiences with not getting the treatments I have needed or the financial burden lifted from having to go on disability. All Americans should be aware of what other countries do provide and what our country does not provide to us. Thanks for listening.
Well I had the EMG and NCV tests on friday and I’m more confused than ever. The NCV was normal but the EMG tests done on arms/legs were abnormal. My neurologist said that he was stumped and said it was likely to be a problem with my CNS. My MRI was normal and they did not find anything wrong with the LP other than very high pressure. I have a large bulging disc at L5-S1 that I thought may affect the leg EMG but surely not the arms?
He is now hesitant to diagnose GB/CIDP but acknowledges that the pattern of weakness, fatigue and the vertigo are common to a demyelinatory disease.
If anyone out there has any ideas or questions that I could ask him, I would be very grateful.
Well I had a really tough time yesterday finally getting to see the shrink. My ex “the neuro’s aka nurse” had to make a few phone calls and finally got me in about 4pm. I told them I wasn’t going to take another pill until they figured something out that was screwing my whole world up. I agreed to at least take Lexapro which is the most recent they put me on. After filling out all the normal 100+ pages of BS I got into his private office. We started discussing several problems I was having with slurring and spelling ,walking,depression…..etc. Then I told him I had a list of meds I was taking and he said great in a way he was very impressed. I showed it to him and he said oh my and then started looking at it and said …..why are you on 3 anti-depressents? I asked which ones and one was Cymbalta that they told me to quit and substitute with Lexapro and then he said that was great. He then proceded to tell me that this was going to be normal and there were up days and down days coming and no predicting when or for how long or how severe. I to him my ” I don’t care was broke” he said I was going to have to learn how to function without it sometimes. So in a nut shell when I get so depressed I need to have the sense to put myself in a safe place , put myself in a place where I’m not alone so I can’t think about being depressed. Actually what it all boiled down to was I have this and will have this and will never know anything other than the moment about this! I sit here right now thinking how in the hell I am going to go about training myself to deal with this. I know it will be possible because you all have done it, now as to the extent we all have had gbs is not a matter to me , because basically all our lives have been turned upside down or tilted in some way or another. My mind is working overtime as usual but on a totally different problem now.It freightens me to think I will have to keep on my toes so much to make sure I can reconize the depression coming so nothing really stupid happens. I’m going to have to “pre-warn” others that I really don’t mean anything about what I’m about to say or do because it’s just my illness. As we were walking out of a really nice resturant last night I caught myself wanting to tell this guy he was ordering his Martini all wrong because “I” know the best way a Martini is supposed to be made. I DON’T EVEN DRINK ANYMORE AND HAVEN’T IN OVER 2 YEARS! Besides why the hell should I care ?Oh MY! I have so much adjusting to do. Geeeeeeezzzzzz I just looked and this is a rather long vent “almost as long as my 13 day vent” (not even funny). I am going to rely on you all for a long time it seems. If there is anything this demented mind or crippled old body with a attitude can do to help you, just ask and I’ll do everything in my power to try. I’m going outside with the pruners and take some anger out on some plants. (I can actually hear them scream) :p
I dropped Nate off yesterday for Pt. He was equipped with his new AFO and new shoes too. Big size 16 New Balance monster shoes.
I Wish I had gotten to stay but I had to go drop off a specimen at his doc, then hit Costco, grab some stuff, all in 50 min. I did it though and got there right when he was coming out the door.
I missed watching him take a small step up on a box holding parallel bars and I missed him walking outside with a walker up a small incline.
He says both things were hard to do but he did it. The AFO is making it so much easier to walk now. His ankle isn’t going to go anywhere. YAY
He says his knees kept trying to go out cause we forgot his knee brace.
He was accomplishing something new and I missed them. Darn
It’s almost like watching your baby take their first step up the porch.
The last time he took a step up was December 05.
Oh well, I will get to see him do it again tuesday. It should be fun.
I went yesterday to this new neuro for review of my tests. Fortunately, my niece who has been living in England is home visiting and went with me with paper and pen in hand!!!
Not all the blood work is back yet, but he said lots of stuff looked good except my Vitamin B level was on the low side. My niece and neuro discussed what type of B complex I need so she is going to pick me up some at Atkins today. The neuro talked about something new on the internet that has shown promise with Parkinsons and Downs, but I have to wait to see my niece’s notes for what this is called. He said it was expensive – what else is new. I will share this info. soon! He did say my sed rate was fine as my electrolytes. Good, huh?
At one point he did say I had chronic GBS and put as my diagnose Sensory Polyneuropathy. We discussed getting an MRI of my head and neck, but he said even if he found something he would not operate as I was functioning fairly well. So I said no to the MRI as this is costing me $1,000 of my deductive anyway. I am still having problems with my right arm tingling and my right thumb is numb all the time now. He said I have carpel tunnel in both wrists as the NCV showed this. He told me to get braces for both hands. I guess I will put up with the tingling for a while as I am mentally and monetarilly (?sp) overloaded right now.
I am so grateful my niece was home and able to go with me. The situation with my dysfunctional family is about the same. In fact, my niece told me that is why she will never live here and has chosen England and maybe San Francisco if she does stay in the states. She was very supportive and let me have a good cry after we left the doctor office.
He came down on me hard about smoking, the little beer drinking I do, exercise and weight. Remember I am on amitryptiline and as most other meds, the side effects include weight gain. We discussed other meds such as Lyrica and the old standard Neurontin, but since amitryptline seems to help for nerve pain and it is cheap, I am sticking with it. He had me up my dose a month ago from 25 mg to 50 mg, but he agreed I could go back down to 25mg until I get to hurting too much.
This was all such a big mental stresser yesterday as he offered no compassion in the way he spoke with me. Step one – I am going to keep riding my exercise bike and more dieting. Next paycheck I will buy some nicorette gum to at least cut back a bunch, but I don’t think I can quit this very moment. I intend to do my little beer drinking with my friends as that is very helpful with my attitude in life.
He wants me back in 1 month – I suppose the rest of the bloodwork will be in. I hope to show at least 5-10 lbs dropped and am able to report progress with my exercise bike. I work with several women that are on a variety of diets and I will watch what they eat and how much and do the same for myself.
Oh, last thing, he did write a Rx for physical therapy as I told him I never got any when this first hit 10 years ago because my job at the time wouldn’t let me off work. I don’t know what I’ll do about that as I really can’t take off work much where I am now. It is all just too much to digest right now. I am lucky I have a job that puts up with me taking off a day a month with whatever I tell them is wrong with me.
Sorry this is so long… it feels so good writing here as I know you all understand what is happening. I got affirmation that there is something wrong with me (it’s not in my head) and really didn’t expect any miracle drug. So I suppose I should be content with this doctor’s visit.
Thanks for listening 🙂
Had my first Rituxan on Thursday and no bad side effects. Yippee! I did feel a bit better on Friday than I usually do. Then Saturday, went back to feeling kinda tired again. Will keep posting updates as I go through the next 3 infusions.
It’s good to hear you’re doing better again. I got to know about you through your mom and through Pam H. I really do believe that we have hope and I really do believe that a cure can be found. Whenever you need understanding people to talk to, come back here.
Hugs to You.
I’ll contact Jethro “IF” and “WHEN” I find out that I do have CMT, but since it’s heriditary (sp.?) I don’t think I do. I know of NO-ONE in the family, certainly not close nor distant that has it. The new neurologist “keyed” in on my feet because the toes on my right foot curl just a little and if I do have foot drop, as far as I’m concerned, it’s not so bad I need AFO’s.
There is no CMT in the family, but there are neurological disorders.
I’m back again and letting myself get more confused. Does genetic testing mean that my mother and/or my brother would have to be tested???? I just will not have it done if I have to tell family and it involves them. I could explain, but so far no-one has ever understood why I don’t want family to know.
My mind will go back in time sometimes and when I was at the doctor’s office, I told him that even when I was healthy (before CIDP), I could not “walk a line” (I’d fail a drunk test, he he he), you know, when you have to place one foot in front of the other and walk a straight line. A neurological problem??? I don’t think so, I still don’t because this was the “ONLY” thing wrong. I was never an athletic person, “COUCH POTATO HERE!” and isn’t it normal for some people to just be clumsy. I could run, I never tripped over my feet, etc., etc.
I always think of things “after the fact” and now I’m thinking that I’ll hold off on going back to short term IVIG’s. I am starting physical therapy again on Thursday. I found a really great clinic, that will challenge me because they have ALOT of exercise machines AND they have a POOL. It is true that my motivation was ripped apart for almost a year, due to STRESS and FRUSTRATION which causes bouts of depression, my mother’s declining health and trying to be one of her caregivers, problems with the two other caregivers she has (we lost one, but now use an agency to provide), BIG problems arranging transportation for myself.
I want to see if the physical therapy will move me forward again because I AM STABLE, I SHOW NO SIGN OF RELAPSE OR PROGRESSION. I think I just allowed myself to get very much out of shape.
Just thought I’d add a few things. If a genetic test is bloodwork, then that is what I will be having done. I know of NO-ONE in the family, close or distant, who was diagnosed with CMT. There is a question about what is wrong with my mother because about four/five years ago my mother was having symptoms like numbness/burning red feet, pain, falls and a neurologist told her she had “a neuropathy”, she never had enough done to diagnose. Because of her age and other medical problems, she cannot go through the necessary tests. But, again, there is no known person in the family who has CMT. I do have very little or no forward movement in my feet, but I’m just not seeing a problem putting the foot down. I don’t think I have a drop foot, so even though one AFO was recommended one time, I felt that I didn’t need it.
AND YES, ALL MY OLD RECORDS WERE GIVEN TO THE NEW NEUROLOGIST.
I’m willing to try going back on IVIG’s since the doctor agreed that I was doing well enough not to really need them. THEY MIGHT JUST GIVE ME A RE-BOOT.
Since this is a new neurologist who saw me for the first time, I’m thinking he might just be seeing things that aren’t there.
🙂 All I can do is keep hoping the recovery keeps pace. My heel to toe has come back it seems better than pre GBS. My PT has been stepping my therapy up it seems like every day. Now I am on the treadmill for 30 min with 5# weights on each ankle and then backwards for 15 min. , then I get on the stationary bike for 15 min at level 5, still with the weights on. I’m able to walk on the wood floor barefooted now. My calves still take awhile to turn loose in the mornings and after sitting for any extended time. The itching is getting better but still is there. I’m trying to wear the ankle weights at all times but in the evenings I take them off sometimes just for a treat . All in all I feel very fortunate to have a recovery that is going so well from what I have heard and read. I just want everyone to keep a faith and hope and NEVER GIVE UP. My doctors say I’m a miracle. I will live as if I am every minuite. I will get some news on the weird protein they found in my blood during the testing on February the 8th. 🙂 (keeping fingers crossed). If I can help anyone just let me know.
Since posting this, I have undergone further, more sensitive testing that has indicated that the glaucoma discovered in my left eye was probably not caused by GBS. That conclusion was made because deformation of the optic nerve is present and, apparently, GBS damage would present in a totally different way. Unfortunately, further testing has also discovered the nerve damage to be more extensive than previously thought so I’ve been placed on eye drops and will be evaluated again in 60 days.
[QUOTE=jparks523]I am trying to learn if any medical research has established that Guillain-Barre Syndrome causes or contributes to Glaucoma (optic nerve damage). I experienced rapid onset GBS with complete peripheral paralysis (but not heart/lungs) on 07/05. Hospitalization and therapy was completed in about three months and I’m now completely ambulatory but still dealing with the dreaded pain, fatigue and other residuals as best I can. I take Topamax (100mgX3).
I’ve been a type II diabetic for many years so I’ve always been sure to have my eyes tested for Glaucoma. Glaucoma means damage of the optic nerve and is a leading cause of blindness. Diabetics are at risk for glaucoma because high blood glucose levels can damage nerves as well as internal organs. Another cause of Glaucoma is high inter ocular pressure, the pressure of the fluid inside of the eyeball.
During my recent eye exam, my inter ocular pressure tested in the normal range, as it always has, but a Visual Field Test indicated significant damage to the optic nerve in my left eye. Since I have always kept my blood glucose level under control and my inter ocular pressure is normal, my opthalmologist suspects Normal-tension Glaucoma. So, the eye doc wants to put me through every medical torture test under the sun to learn what caused the damage. But I feel that if there is a medically established link between GBS and Glaucoma, why make me more of a lab rat than I already am? I also don’t like wasting medical resources answering a question that may already have been answered. Can anyone shed some light on this?
We are seeing very little progress with Dad. We won a small battle with the tv. The hospital purchased a new lcd television and a dvd player for ICU. Unfortunately I had to treaten the media and the human rights commision to get their attention. The doctor told us it was very important to keep him stimulated and current. Then somebody receives a memo that when the tv is in use he could roll over touch the iv pole and get an electric shock. Needless to say he can’t move let alone roo-over. Enough rambling he now has a high tech tv that passed code for ICU.
Dad has a yeast infection a bed sore on his behind and a nasty case of diareah. Are these all textbook when in his position. Will see again today.
Can things get any worse or will we ever see improvement………..
I’ve been taking it for two weeks now and it seems to be working. I’m not having as many “flashes” and the few I do have are minimal in heat and sweat. I’m pretty excited and I hope this works forever! Yippee!
Hi, Gene and all, I just wanted to give you an update. My dad is back at the rehab facility and his voice has come back since the 2nd round of IVIG (Yeah!). Our main concern right now is that my dad has lost a lot of weight in the past two weeks. He went from 126lbs down to 108lbs. Has anybody else experienced a rapid weightloss with GBS?
Also, does anybody know how and when GBS turns into chronic gbs? I cannot seem to find the answer to this.
prednisone is not for gbs, only chronic gbs [cidp]. however regular infusion of ivig should be tried [say every 6 weeks] first instead of prednisone for cidp. prednisone costs pennies. ivig costs $1000s. but prednisone has very bad side effects & should be a last consideration. take care. be well.
gene gbs 8-99
in numbers there is strength[/QUOTE]
Hi, we are at the month and a half mark and my dad went through another round of IVIG. His voice started to come back around the 4th day of treatment. Yeah!
However, much to our frustration, my dad has been release from the hospital because he’s not sick enough to be in the hospital and not well enough to be at Stanford’s Rehab. facility (needs to be able to do 3 hours of physical therapy and he cannot). So, we are now back at the original rehab facility.
The doctors at stanford have said that my dad has a very acute case of this and it could be chronic….and might not ever get better beyond what it is now. The next step in treatment is a steroid treatment (prednesone sp?). And, of course, he will have physical therapy everyday.
Now we are at the ‘wait and see’ mode. So, we wait and see.
I wish you all a lovely weekend!
thank you all for helping courtney this site has been such a blessing for her. My dad is doing better today moving his legs and responding eventhough he is still sedated. Life is so hard right now my grandfather took a turn for the worse and hospice has given him 48 to 72 hours to live. My father is going to be so sad to learn he lost his dad through this whole thing. You all are so strong I hope we have the strength to get through this and help my mom, she is going to miss my grandfather so much. This is such a horrible thing to go through and I know you all keep saying slow recovery but I want my dad back now and have such a hard time being patience. Thanks for all your prayers and support. Erica